Where do I start? When my Mom was 90, she fell in her apartment during the night. She was taken to the local hospital and was treated for a weak leg. I had constantly asked if they scanned her head and was told no. She was placed in rehab for her leg and at the time I was living in NY and she was in northern VT. I called her at the rehab, and she was babbling so, I then called the nurses station, and she was rushed to the local hospital and was then transferred to UVM Medical Center where brain surgery was performed for a brain bleed. Come to find out, there were two prior brain bleeds that I wasn’t aware of, she had never even mentioned hitting her head. She could no longer return to her apartment but had to reside in assisted living. She thrived and functioned quite well and actually loved the activities. I was able to find a job and moved to be near her in August 2017. She passed 4 months later on December 23rd, 2017. I was planning for her funeral to be in May 2018. During that time, I was planning to have my Dads ashes buried with her in Stowe VT where most of her family were buried. Unbeknownst to her, I purchased a plot for her and Dad. I was preparing for the inevitable.
Now my turn to tell my story. July 22nd, 2018 was the day that changed my life. Let me add that I have been a Service Coordinator for a brain injury program in NY for quite a few years and continued that path with another agency when I relocated to VT in September 2017. On July 16th, 2017 I went to work with a headache on my forehead. It was July and quite hot plus my phone was ringing constantly, emails to answer, there were meetings to attend and emergencies were fairly common. I was busy. The headache continued on my forehead for the rest of the week. Was it a migraine (which I get), Maybe a sinus headache or was it just plain old stress? Remember I also advocated for my Mom and she was moved up to the full care of the nursing home 2 weeks after I moved to VT. I didn’t have time for myself or my week-long headache. On that Friday, the headache moved to the right side of my head. I wanted to go home, and I felt grumpy, which surprised my office mate. On Saturday morning I awoke to a banger of a headache and I spent the day on the couch with my migraine meds and a cold pack. During the early morning hours of July 22nd, 2018, I threw up. I waited until it got light out and I called my cousin that lived nearby and asked for a ride to the local ER. Within a very short time, a scan was done, and an ambulance was called. The doctor came into the room and informed me that I had a thrombosis in my head. I was being shipped off to UVM ASAP!! Having flashbacks of my Moms journey, I panicked. I looked at him and my cousin and I informed them that I needed to be medicated or I was leaving. The doctor then appeared with two tiny white pills. I was transported quickly with the EMTs notifying the ER our time frame and to have neurology waiting. As we pulled into the ER, I was rushed in and assessed. Lines and machines were attached, and I was taken to the Neurology Dept. I was receiving blood thinner and lots of tests, constantly checking my cognitive reactions. So far so good, I guess, I don’t think I had a stroke. The next day, July 23rd, 2018 at the UVM Medical Center, the sun came up and I had gotten no sleep. My nurses and neurology team have been testing me throughout the night. I was still “doing well,” no stroke. Meanwhile, my sons were calling me, and we were trying to figure out how to handle all this. They were not even in the same state as me. I was keeping my cousin posted, so I was alone. 4 neurologists and 6 or 7 students walked in and the room was crowded. One neurologist spoke up and informed me that I had DVST, a rare blood clot that they have only seen two of in 10 years! Great!! “So-how big is this clot?” I asked. The neurologist informed me that the clot was 5 inches long. The room was silent. So, I figured that I needed to say something- “Holy shit. I have a snake in my head.” Needless to say, no one spoke. This is serious, I concluded. Throughout the day on July 24th, 2018, I was watched closely and brought downstairs for all sorts of tests, scans and blood work. Then a nurse came in and informed me that I will need to learn how to give myself injections of blood thinner when I was to leave, which was the next day!!!! What?? Really? It took me 11 hours to be able to do that. I was discharged July 26th, 2018 to my son that came from MA. I continued to give myself shots while being weaned off to another blood thinner and 2 to 3 visits a week to my primary care to monitor my INR numbers, which was all over the place. The rest of this whole adventure was advocating for myself with a very supportive primary care doctor. I went through 3 neurologists over the next year. One being at Mass General. I needed a second opinion.
I did begin with a hematologist in VT that has been the best thing since sliced bread. I am now on a medication that does not need my INR numbers checked. I spent the better of 2 years in and out of doctor’s offices and hospitals looking for an answer. Guess what? There aren’t any answers, only speculations. One thing that was for sure, brain swelling takes up to a year to heal, and having a medical issue that only 3-4 people out of a million have, is something I am still dealing with. I have seen a neuropsychic counselor and now a counselor to just sort out issues that I’ve struggled with. It hasn’t been three years yet. I’ve had to keep up with scans and tests and I did struggle with this. You have to be aware of how you feel and don’t downplay it because you’re tired of the whole ordeal that has turned your life upside down. Thanks to my skills from my career of choice, I knew the ins and outs of navigating the healthcare system. What I wasn’t ready for was the physical and mental side effects that interfered with self-advocating. My support system, my family and my sons have been there for me. My team of doctors that I finally felt confident with have been superior. There is a very overused phrase that I’ve always disliked but pretty much sums it up- “It is what it is.” I really am very lucky it could have gone very differently. In May of 2020 I got clearance that the Snake in my Head was gone. My mental health and everyday living have been impacted. I am no longer working but, the funny thing is, is that I kept telling my director at the agency I was with that I’ll be back. I started that conversation a month after my incident. My personality is to deal with things and keep going. Little did I know that this was bigger than I wanted to accept.